I loved going places. When I met my future husband while we dated we discussed our travel plans. Both of us loved going places. When we got married it was a rare weekend that we were home. When we moved to Florida we spent a lot of time going places. I loved being out and about.
We moved back to Virginia and started the adoption process. As most of you know this little butterbean showed up.
I love finding his older pictures. Marvin is three in this one. Anyway, I digress.
When Marvin came home we tried to pick up and resume our busy schedule. Unfortunately, Marvin had problems right from the get go. He didn't just go with the flow. He demanded a tight schedule. Everything had to be just so. A few eyebrows were quirked here and there but we adapted. We had to do less and eventually found out Marvin has ADHD, sensory processing disorder, and recently we have received the possible news that he may be on the spectrum. But that's a whole other post for another day.
Then we got our youngest. We knew when we brought her home she would be a game changer but I didn't realize some of the things we would be giving up.
But one look and we were both goners. But things changed. My day to day routines were disrupted with hospitals, doctors, diagnosis, therapies. Rinse, lather, repeat. I became familiar with new medical terms, medicines, and therapeutic interventions.
One of the things that changed was our ability to go when and where we wanted. My husband was talking to me today and told me that people were giving him grief about not being able to see the kids. I don't think people understand what taking the kids to places looks likes for our family.
Say I'm going to take the kids to my in laws. They live 20 minutes away from the house. Ok, easy enough right? Throw a diaper bag and the kids in the car and go right? WRONG!
Marvin has a hard time with scheduling. We work very hard to bring him during his better times in the day. He has food allergies so I pack him food that he can eat. That's not too bad. We also talk with him before and after leaving and weave in lots of social stories about different situations. Most of the time he does pretty well. He loves seeing Grandma and Pawpaw.
For Cary Lynn we have to take a little more. I pack a diaper bag and three outfits because she will manage to to go through at least one. Plus she may overheat since she can't regulate her body temperature. So extra is a must. We then have bags for poop. Not bad yet, right?
Ok, so CL can't sit and it isn't always easy dragging a wheelchair up stairs. So we often need to pack something to sit in. She's also G-Tube fed. So there needs to be tube supplies. And food in case she needs to eat. Oh and medications. So there needs to be a cooler of sorts to keep stuff cold.
And a medical bag. For a light trip I only need the spare 15-20 extra items. I keep it in the car. I've had to send Shannon back on many occasions though anyway.
So that's a pretty good description of a nearby trip. These trips are planned as well. We don't just wake up and say "let's go." Supplies need to be handy and there is prep work involved.
Let's say we are going a little further. Like to the zoo. It's an hour away. And outside. We plan at least a week in advance. I scan the weather like a stalker after it's prey. I plan the times with care.
For Marvin we start slowly prepping him. Social stories, things he might see, not to eat certain things.
For Cary Lynn I pack the diaper bag, cooler, and the medical bag. But now we add a few more things. We take extra supplies for Cary Lynn because the weather is hotter. Her cool wraps, water for bolusing through the tube, an umbrella, hat and fan if we have one. We also take about 30 extra items. Syringes, tubes, a partridge in a pear tree..... It can be a lot. Often times it looks like I'm getting ready to move out I have so many bags by the front door.
So every trip, every invitation has to be considered. You can just imagine what a big trip would look like around here. It's also not just the packing. Cary Lynn has a lot of medical conditions. Life threatening medical conditions.
She has a weakened immune system. A cold from another child can put mine in the hospital. It isn't going to get better. She also can't tolerate being outside for long periods. She can't regulate her body temperature. Hot and cold conditions can really make her sick. Or drain her energy reserves. I'd love to just get up and go with her, but her little body isn't made for that.
Sometimes, it's just me. I've had 30 appointments, someone got a new label, or it's just been a more exhausting week of caregiving. I'm tired. Like tired to the bone and back tired. I just want to unwind with a good book, have a big ugly cry, or process what I've just learned. I love my kids, but it isn't always an easy road to walk.
We do miss seeing people. I miss it. I don't like not going places and I don't like my husband getting flack over it. But I wouldn't change the life I have now for the one I had. Life before kids was good but this life is so much better. We will do our best and hopefully people will understand that we are trying. But these two are worth it all.
